Stem Cell Transplant Excitement?

“Your son is going to have a stem cell transplant and they have a donor? That is so great! You must be so excited!” someone said to me.

It is a wonderful thing that transplant is an option for him and that they have found a good donor. We are hopeful. But excited? No. I am not excited. Horrified would be a better term to describe my emotions. If it were a new heart or new lungs or a kidney, there might be reason to feel excited. But stem cell transplant is different. It is
our last hope to get his body to quit producing leukemic blasts, and just the process can be fatal.

In preparation to receive a stem cell transplant, Derek’s body as we have known him will be destroyed. He will receive high doses of total body radiation that will destroy his own bone marrow and immune system.  It will make him much more prone to other cancers in the future. The radiation will darken his skin, and it may peel like a bad sunburn. He will lose whatever hair he has left. He will also lose his ability to ever have children of his own. It will fry his pituitary gland so he will not produce adequate growth hormones. Because he is a child, he will likely stay the height he is now until they give him growth hormones in a couple years, and that can cause more problems. He will get cataracts in both eyes within a year and have to have them corrected with surgery. They will follow radiation with higher doses of chemo than he has ever received. The chemo can cause severe heart or liver damage that he would not survive. There is no way they can know ahead of time what will happen, but they will monitor him very closely as he receives the chemo. The pretreatment begins on September 2.

When he receives the stem cells on September 9, the biggest immediate risks will be infection or his leukemia returning. Also, a battle will begin between the graft stem cells and his own body. This condition is called graft versus host disease (GVHD), and it is both good and bad. They will give him medications to try to keep his body from rejecting the graft stem cells. But strengthening the graft will allow it to attack his own organs, and they will give him medications to try to prevent that, too. They want the healthy new graft cells to destroy the leukemic cells and produce healthy marrow, but they don’t want it to destroy his organs. It still can. GVHD and the medications to control it will change his appearance to the point he will be unrecognizable to those who have not seen the process. His face will get very puffy and round, and his skin will change.

The list of probable and possible effects of the transplant process is pages in length and is equally horrendous. Life, even as we have known it in the last three years of his cancer battle will never be the same.  How do you tell this to an eight-year-old boy or his 11-year-old sister? Or do you?

I don’t mean to imply that I have lost hope. I haven’t. Many transplants are very successful and give the recipient years of life. We hope for this. Beyond that, the last three years of Derek’s illness and other crises in previous years have proven to me that God is with us always, just as He promised. Ultimately, this journey is about in WHOM we have placed our trust and not just for WHAT we hope. God is faithful, and I have no doubt He will continue to walk with us. He will give strength and courage for whatever comes, and He will provide what He sees is best in His big picture. 

So, this new bend in the road in Derek’s leukemia journey leaves me hopeful, bracing myself for whatever lies ahead, but not excited.